1.  42
    Duty to disclose what? Querying the putative obligation to return research results to participants.F. A. Miller, R. Christensen, M. Giacomini & J. S. Robert - 2008 - Journal of Medical Ethics 34 (3):210-213.
    Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of (...)
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  2.  72
    Clinical obligations and public health programmes: healthcare provider reasoning about managing the incidental results of newborn screening.F. A. Miller, R. Z. Hayeems, Y. Bombard, J. Little, J. C. Carroll, B. Wilson, J. Allanson, M. Paynter, J. P. Bytautas, R. Christensen & P. Chakraborty - 2009 - Journal of Medical Ethics 35 (10):626-634.
    Background: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results. Methods: To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand attitudes regarding result management (...)
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    What does 'respect for persons' require? Attitudes and reported practices of genetics researchers in informing research participants about research.F. A. Miller, R. Z. Hayeems, L. Li & J. P. Bytautas - 2012 - Journal of Medical Ethics 38 (1):48-52.
    Background It has been suggested that researchers are obliged to offer summary findings to research participants to demonstrate respect for persons, and that this may increase public trust in, and awareness of, the research enterprise. Yet little research explores researchers' attitudes and practices regarding the range of initiatives that might serve these ends. Methods Results of an international survey of 785 eligible authors of genetics research studies in autism or cystic fibrosis are reported. Results Of 343 researchers who completed the (...)
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